Christchurch, New Zealand; email@example.com
1963 / Class of '98 / Type: IgA-Lambda / Last Update: 5/02
Hello to you all, My name is Warren Harre. I am 34 and now live in
Christchurch, New Zealand. I was dxed with MM Stage IIIA, IgA (6860mg/dL) Lambda
in Feb. 98, after some 5 months of pain not dissimilar to a slipped disc. Prior
to diagnosis I had been treated with anti-inflammatories, occasional analgesics
and physiotherapy. I was living in Hong Kong prior to returning to N.Z. in Mar
98. For the last 2 annual medicals I had mentioned to my G.P. the small bump on
the back of my head which didn't really bother me. But I did not mention the
slightly tender lower ribs and "crackling" sternum. Well, for fear of
sounding flippant , "You live and learn" !
On diagnosis and with my consent, my Haematologist. in Hong Kong started me
on VBMCP (M2 protocol). Aredia 90mg was prescribed due to spinal compression
fractures at T4,6,7,9. In addition there was some epidural encroachment at L2
& L3 plus lesions in my sacrum, two ribs, sternum and 3 in my skull.
Radiotherapy to L2/L3 was carried out over 10 sessions to control the soft
tissue mass which was causing quite a lot of pain and reduced mobility. A
further 5 sessions were targeted at the thoracic region to control pain at T9.
During this period I was suffering from intense spasms in my lower lumbar region
which lasted for about 2 - 3 seconds.
This was further aggravated by an uncontrollable cough reflex from the
diaphragm. I believe the monthly dose of Aredia plus the R/T and a back brace
helped quell most of the pain about 2 weeks later. I have been pain free since
with good movement.
A decision was made to return to N.Z. for continued treatment in a
"friendlier" environment in late March '98. My team in Christchurch
gave me the choice of MP, or VAD (Modified) with a PBSCT. I have chosen the high
dose VAD regimen and am currently on day 3 of 4 on my 2nd cycle of VAD via a
side kick pump. I am taking Cimetidine 400 mg and Co-Trimoxazole 480 mg to
prevent stomach upsets and pneumonia respectively. Dex. is prescribed at 40 mg
daily for 4 days during infusion on course 2,4,and 6 and days 1-4, 9-12, 17-21
on courses 1 & 3. Courses 1 & 3 are 28 days; 2,4,6 are 21 days. I have
had no serious side effects other than a slight burning sensation in my
oesophagus at night and a slight tendency towards hiccups. The Dex seems to be
quite "agreeable" with some water retention, flushing of the face and
neck, slight tendency towards acne and a positive mood. Lets hope it stays that
Unfortunately, I became refractory to VAD shortly after my 4th
treatment and my doctors has suggested trying high dose chemotherapy without
stem cell rescue.
August '98 - In late July it was decided to attempt a stem cell
harvest even though the IgA and biopsy showed high levels of disease. The reason
behind this was that any further treatment would most likely consist of high
dose melphalan and this of course is toxic to stem cells. On July 21 my IgA was
48.5 g/l, B2M 2.38 mg/l and plasma cells 28%. On July 28 I received
cyclophosphamide in preparation for the harvest. The following day I began G-CSF
shots and I was harvested on the 6th and 7th of August.
November '98 - Some of you will recall that I underwent the above
treatment over the month of September '98. Prior to the beginning of the
treatment my IgA was 47 g/l and marrow biopsy indicated a plasma cell
concentration of 28%. 23 days after commencement, IgA had decreased to 24%. My
most recent blood work, biopsy and aspirate performed at 41 days indicated a
further decrease in IgA to 18.8 g/l and plasma cell concentration at 7%.
As of yesterday I have commenced maintenance Interferon-Alpha 2a @ 3 million
units, 3 times a week. The plan is to elevate the dosage if it is well
tolerated. The expected flu like symptoms of Inf use were experienced but were not uncomfortable. These side effects "should"
subside after a few weeks as the body assimilates the extra Inf.
Needless to say I am very pleased with the results so far. Long may the disease
activity remain subdued.
I have just had a fantastic 2 weeks with a friend, who lives on the Gold Coast
just south of Brisbane, in Australia. They had the Indy Carnival (motor racing)
while I was there. Another friend of ours, Alan Jones a former Formula One World Champ, lives there and was also racing over the
weekend. Most of the drivers were from North America, Bobby Rahal, Al Unser Jr
and the likes. Absolutely fantastic weather, 78 and fine.
Bruce, my friend, and I then flew up to a resort at Hamilton Island in the
Whitsunday group near Townsville on the east coast. Once there we planned a 3
day journey to bring his 40' launch back, where he had been "wintering" it, to the Gold Coast. We covered 600 miles in those 3
days. Great fun and my health never missed a beat. There must be something in
dark rum and beer!
A really funny thing happened while we were at the resort. I was standing in the
bar one evening having a "7 Up" when I got a tap on my shoulder,
"What are you doing here?" said the female voice. I turned round and found it was 2 of my haematology nurses from home. They were attending
a haem/onc nurses conference on the island! How uncanny.
December '98 - It has been a while since I've posted, but my results
continue to be encouraging following my high dose melphalan without PBSCT in
September. My progressive IgA's in g/L are as follows: Pre-treatment, 8/98: 47.5; Post,9/98: 23.5; 10/98: 17.5; 11/98: 13.6.
I have chosen INF for maintenance. I started with 3 mega units, 3x weekly for all
of Nov, escalating to 6 mega units as of the beginning of Dec. I feel as if I am
tolerating it well without any significant side effects.
I have a consultation late next week with my Dr. She wishes to discuss my
proposal to add Prednisone to IFN. I base this on a SWOG study published in
J.Clin. Oncol in March '98. It indicates a PFS median of 19 vs 9 months, and median survival from start of maintenance of 57 vs 46 months,
for IFN+P and just IFN-A respectively.
January '99 - With Xmas and the New Year back in the closet for another
year it's time for me to come out! Of the closet that is!
Some of you may recall I underwent high dose chemo.(140mg/m2) without PBSCT in
Sept. '98. Currently I am on Inf-A, 3 mega units during November and now 6 mega
units plus monthly Aredia.
The important thing is that my IgA paraprotein has continued to fall to date. My
IgA figures of interest over the past months are; Aug: 47.5 g/l
(pre-treatment), Sep: 23.5 (post treatment), Oct: 17.5, Nov: 13.6, Dec: 10.7.
At plateau I will be commencing a PBSCT. I am experiencing doubts about the
timing of this procedure. Although pro transplant my general health has been
fine to date and it seems a pity to upset it in the near future. Who is to say that the plateau will not persist for some months or
longer without the PBSCT? This could mean a better treatment "may"
become available without the need for a PBSCT in the short term. Wouldn't it make more sense to wait for the end of the plateau, whenever that
may be, before proceeding?
On 20 January '99 an IgA paraprotein level of 11.2 g/l was taken. It was
at this point that my Drs. felt it would be worth a try at coming off Interferon
to attempt a further harvest. My previous harvest the year before had
yielded good numbers of cells but the tumour burden had remained high at 48 g/l.
There was some concern that because I had to be off Interferon for 6 weeks
before they could attempt another harvest that the disease may "erupt"
again. I felt the potential benefits of this far outweighed the negatives. In
early February '99 I came off the Interferon and my IgA on the 11th
February was 10.6 g/l. Unfortunately by the 3rd March it was 17.8 g/l and the
10th March, 19.2 g/l. Our worst fears had been proven.
It was at this point that I was told I would be being admitted in the next
few weeks for an immediate PBSCT using the harvest from August '98.
March '99 - The protocol for my PBSCT was 200 mg/m2 of Melphalan
administered on PBSCT-1. The next day my cells were given back to me and I
commenced my recovery. Apart from a few incidents of dry retching on days 3 and
4, most likely because of the methyl prednisolone I/V from Day 1 to 5, and
some gripping stomach cramps on days 5 through to 8, the whole process was
painless. I was discharged from hospital on day 13. Over the next few weeks I
did return to hospital on a number of occasions complaining of diarrhoea and
high temperatures. The diarrhoea did persist for a few months afterwards and it
was a concern to me. A course of Flagyl finally fixed it following all sorts of
December '99 - My recovery during the year has been otherwise uneventful and
I have had a very good quality of life. I recommenced 6 mega units of Interferon
A, 3 times per week and maintained 90 mg of Aredia every 28 days. At PBSCT+61 my
IgA was 4 g/l. At PBSCT+138 in August '99 my IgA had further reduced to 3.3 g/l.
It appeared that the PBSCT had been a resounding success and my Drs and I
were hopeful of a lengthy plateau. Unfortunately in September '99 my
IgA rose to 4.1 g/l and a subsequent biopsy showed 7% plasma cells. In
October it had risen further to 4.5 g/l and in November to 4.9 g/l. It appeared
as if I was relapsing.
A second opinion was obtained from a specialist in Australia and he concurred
with the slow relapse. His suggestion was to commence an alternative therapy
consisting of 50 mg, alternate day Prednisone and add Thalidomide. I have
started the Prednisone but I am currently awaiting approval from the health
Authority on the use of Thalidomide.
January 2000 - I commenced 200mg Thalidomide with the Prednisone and
Interferon in mid January. After 4 weeks the Thal was escalated to 300mg and a
further 2 weeks later to 400 mg. Finally 4 weeks later I increased to 600 mg.
However my IgA continued to rise, fortunately from a low level of 5.5 g/l in
January 2000 to 10.9 g/l in late June 2000. It was apparent that this
combination of drugs was not working and that I was suffering from all the usual
side effects of Thalidomide, most noticeably slight peripheral neuropathy in my
feet, mild fatigue and a slowing of my thought processes. The decision was made
to stop the Thalidomide in June 2000 and I continued with just alternate day 50
mg Prednisone and 6mIU Interferon 3 times a week. Strangely enough over the next
few months I noted a gradual decrease in my IgA of 25%. Coincidence or not after
stopping the Thal? My health remained stable throughout the remainder of the
year but the peripheral neuropathy remained.
May 2001 - In May 2001 my IgA showed the first signs of rising again.
It was now 12.9 g/l, a month later it had risen to 18.2 g/l. By mid July it was
22.9 g/l and in an effort to halt the rise, it had been decided to stop the
Interferon and add pulsed Dexamethasone at 40 mg once a week in addition to
alternate day 50mg Prednisone. I experienced incredible and painful cramping in
my lower legs on this combination. The addition of dex had little effect at all
and a month later in early August my IgA was now 33.7 g/l. In consultation with
my haematologist in New Zealand I arranged an appointment in early August 2001
with Prof. Doug Joshua, a Myeloma expert in Sydney, who is also on the IMF Board
of Scientific Advisors. Prof. Joshua wanted me to stop the dexamethasone
immediately as in his opinion I was taking too many steroids. He felt that
further chemotherapy was warranted and suggested D-PACE, a combination of Dexamethasone,
cyclophosphamide, adriamycin, cisplatin, and etopiside. Arkansas had been using
a modified version with some success called DT-PACE where Thal was added, but
given my previous lack of response to Thal and the neuropathy I had developed, I
felt that using Thal would be pointless. I had my third Hickman catheter fitted
and I commenced the 4 day continuous infusion of D-PACE as an inpatient in
Christchurch in late August/early September 2001. My IgA at day 26 from
commencement was 33.8 g/l. Essentially this was no change from the level prior
to starting the infusion. It was decided to proceed with another cycle in early
October. At day 40 in mid November my IgA was 39.8 g/l. Quite clearly D-PACE was
not working for me and I could see no point in continuing pouring ineffective
chemicals into my body for no benefit.
December 2001 - After further discussion it was decided that there
would be nothing lost in adding Thalidomide to the next cycle, which commenced
in early December. I was now on DT-PACE. At day 14 my IgA had reduced to 28.3
g/l. Finally a response! This was a welcome Xmas present, however by this time I
was in need of blood and platelet support. I had two bags of blood and a bag of
platelets. Fortunately my platelets recovered well though my haemoglobin has
been slow to rise but has stabilised around 105. I went on holiday with my
family but for the next month or so I felt tired and stiff.
January 2002 - In mid January I returned for a consultation with my
haematologist expecting to see a further reduction in my IgA. Wrong! My IgA was
now 45.0 g/l! This was not good. I could see that the benefit of DT-PACE was
short-lived and we both agreed that further treatment with this regime was
pointless. What to do next? This was when my haematologist dropped a mini
nuclear device. He suggested that now was the time to be considering supportive
care, i.e. throw in the towel. Well "not for me" I said, especially
when I felt pretty well. I had broached the subject of BLT-D (Biaxin, low dose
Thal and Dexamethasone) as developed by Dr Coleman in New York some 12 months
earlier and this had been met with some skepticism then. But now my
haematologist had no objections.
February 2002 - By early February my IgA had risen to 53.8 g/l.
Fortunately I had been symptom free throughout and leading a good quality of
life. I started the BLT-D protocol, but a few weeks later I started experiencing
shakes and chills during the day and at night. I felt it was because of the
Biaxin, or Klacid as we know it in New Zealand. I put up with this for a week
and finally spoke with my Dr who felt that I had an infection in my Hickman.
Cultures were taken and the catheter was removed. My recovery was almost
instantaneous and later I was found to be harbouring an infection. A month after
starting BLT-D my IgA had reduced to 32.7 g/l. This was great news. Why didn't I
insist on this a year earlier and save myself from the rigours of chemotherapy?
Side effects were minimal though I'm sure there has been a slight increase in
neuropathy in my feet and lower calves and slightly in my lips, but the
alternative to this is not so good! Cramps are a problem about day 4 following
the dex, which I take weekly on a Saturday. By taking Dex on Saturday it means
minimum disruption to my working week. For the last 3 years I have been working
as an aviation consultant and lecturer which helps to fill in the time between
fishing and golf! To combat the cramps I'm taking a Calcium, Magnesium and Zinc
supplement daily as well as 2 mg of Lorazepam on Saturday night to combat the
sleeplessness associated with Dex, and again around day 4 for the cramps.
Lorazepam is a mild sleeping pill which has the additional effect of relaxing
the muscles. So far it seems to help. I have been on continuous monthly 90 mg
Aredia since diagnosis in February 1998 and see no point in pushing to change to
Zometa at this time.
April 2002 - In April my IgA rose to 36.4 g/l. My feelings were that
this could indicate the beginning of yet another relapse given my roller coaster
ride of the last 8 months, but the May results gave an IgA of 36.0 g/l. Once
again welcome news for another month. It would be fair to say that I am
approaching the end of the conventional and accepted treatment path. I will
continue with the BLT-D until I become symptomatic at which point I will look at
alternatives which will include Progen's PI-88.